EpiPens for All

By Curtis Sittenfeld

Sept. 7, 2013

Image

CreditCreditStephen Savage

AMARRIA JOHNSON, who attended first grade at Hopkins Elementary School in Richmond, Va., was an outgoing and energetic girl who loved animals, singing and telling jokes. She won reading and citizenship awards and planned to become a teacher. She also was allergic to peanuts.

On Jan. 2, 2012, a classmate gave Amarria a peanut on the playground. Despite her allergy, Amarria ate the nut and soon had trouble breathing. She sought out a teacher, but at the school health clinic, there was no epinephrine auto-injector prescribed for Amarria. Epinephrine auto-injectors, the most well known of which are EpiPens, contain adrenaline and are the first line of emergency treatment for anaphylaxis, an extremely severe allergic reaction that can become fatal within minutes.

At the time, employees in Amarria’s public school were not allowed to use epinephrine prescribed for one student on a different child; instead, the school called an ambulance, which transported Amarria to a hospital, where she was pronounced dead of anaphylaxis and cardiac arrest.

I’m the mother of a child with food allergies, and stories like Amarria’s are my worst nightmare. In describing her tragedy, I question the fairness of reducing a 7-year-old girl to a symbol. Nevertheless I repeat the circumstances of Amarria’s death because it appears they directly affected legislation in her state.

Just a few months after she died, “Amarria’s Law” was in place; the law requires Virginia schools to stock epinephrine and allows school authorities to give it to children without a prescription, and indemnifies those who administer it in a life-threatening situation. There is now an opportunity for similar legislation to be enacted nationally, in the form of the School Access to Emergency Epinephrine Act, and I urge lawmakers to pass it. The House approved the bill in July, and it is likely to go before the Senate this fall.

According to the nonprofit advocacy group Food Allergy Research & Education (FARE), one in 13 children under age 18 has food allergies, with an 18 percent increase having occurred between 1997 and 2007; during roughly the same period, the number of children with a peanut allergy tripled. In other words, if you’re an adult who doesn’t remember food allergies being so prevalent during your own childhood, you’re exactly right. Although there are many theories about the increases, no one can explain them with certainty.

Much like publicly available defibrillators, “stock” or “undesignated” epinephrine — that is, not prescribed to a particular person — can save lives without stigmatizing recipients or potential recipients or creating restrictions for those without allergies. Currently 30 states allow schools to keep undesignated epinephrine, but only four states require it. In an ideal world, every child who has known allergies would have access to prescribed epinephrine during school hours. But any parent who’s ever made a special trip to school to drop off some item forgotten at home — a preschooler’s favorite nap time blanket, a fourth grader’s lunch or a sophomore’s soccer uniform — knows that few of us live in an ideal world.

And even under the best circumstances, epinephrine auto-injectors aren’t a one-time purchase: an allergic child needs them both at home and at school, and they expire. They also must be replaced after use. Fortunately, assistance programs exist so that families who otherwise couldn’t afford them can acquire auto-injectors free or for minimal costs. Similarly, the pharmaceutical company Mylan Specialty L.P. is now in the second year of its EpiPen4Schools program, through which schools can acquire free undesignated EpiPens. The fact that nurses or health aides, who apply for these EpiPens, have taken advantage of the program in all 50 states reflects a widespread belief by medical personnel in the importance of undesignated epinephrine; as of last month, the company had distributed EpiPens to nearly 25,000 schools. But even though schools nationwide have acquired undesignated epinephrine through the program, the laws in some states are confusingly silent about who is authorized to use it. A student’s fate can depend on one adult’s judgment call.

Disturbingly, a significant portion of severe allergic reactions at school occur among students with no prior allergy diagnosis. During the 2012-13 school year, of the 38 people in Chicago public schools who were injected with undesignated EpiPens provided through the EpiPen4Schools program, 21 did not previously know they had an allergy. (The youngest student was 3, the oldest was 19, and two recipients were school staff members.) As a nurse at the office of my family’s allergy doctor has said to me repeatedly, “Anyone can develop an allergy to anything at any time.”

Those of us in allergic families know that being directly affected by allergies isn’t a requirement for compassion; the world, thank goodness, is populated by many sympathetic individuals. Still, it’s not hard to find people who are hostile and disbelieving toward allergies. I suspect that the most vociferous antagonists of the allergic community won’t understand just what it’s like to live with allergies unless they themselves or someone close to them develops them, but I hope, for their sakes, that these people are blessed with the luxury of maintaining their skepticism. If they’re not, I also hope that safeguards such as the School Access to Emergency Epinephrine Act are firmly in place to protect them and the people they love.

Curtis Sittenfeld is the author, most recently, of the novel “Sisterland.”